Budget juggling tosses little girl's life into the air

MICHAEL OLESKER

October 17, 1991|By MICHAEL OLESKER

Julie Bartenstein opens her mouth to laugh, and nothing comes out except silence. But listen for a moment: Sometimes, silence can sound like poetry.

Julie isn't supposed to be here. Born with a 14-ounce tumor at the base of her spine, she survived surgery to remove the growth when she was 2 hours old and then hung on when almost nobody imagined she would.

When she was 3 months old, the doctors pronounced her profoundly deaf. Just before her first birthday, they said she had cerebral palsy. You can see it when she sits in her wheelchair and her head and body seem to rotate with a will of their own.

Last summer, months after her third birthday, the tumor at the base of her spine returned. This time it was malignant. More surgery followed, and then chemotherapy and long weeks inside a hospital.

And now Julie sits in her little wheelchair, and her mother, Peggy Bartenstein, approaches her from the side. Julie spots her, and her face bursts into blossom. She laughs, but nothing comes out. But you can sense something louder, like the pounding of a heart.

"Do you love school?" Peggy Bartenstein asks her daughter.

As she speaks the words, she moves her fingers. Every `f communication becomes an education, a lesson in receiving one message in two simultaneous ways.

"Do you love school?" her mother asks again.

Now Julie holds out her arms for a hug, and her mother leans her face in close, until something lovely happens: Two faces become one. Arms are entwined. And the little girl makes a sign with her hand then, which the mother repeats out loud.

"You love me?" Peggy Bartenstein says, and then the two of them embrace again.

Against all odds, Julie Bartenstein will be 4 years old on Dec. 23. Born in Dallas, her parents, William and Peggy Bartenstein, moved here last spring for one reason: the Maryland School for the Deaf.

"We want Julie to have the best possible life she can," her mother was saying yesterday. "Everyone told us about the Maryland School for the Deaf. This is why we came here."

She's hoping the trip wasn't in vain.

"We're all upset," Dr. David Denton, superintendent of the School for the Deaf, said yesterday. "This is like family. These children are trying to see the stars from the bottom of a deep well."

The budget cuts slicing across Maryland have hit here, too. The governor and the legislature look to cut $450 million from somewhere, and everywhere is fair game.

From a $13 million annual budget covering campuses in Columbia and Frederick, about $562,000 has already been cut from the School for the Deaf.

For openers, it means 28 positions have been eliminated: instructors, clerks, food handlers, maintenance people. There's money to complete the year, but there are worries about having to close the Columbia campus next year if another round of cuts strikes closer.

"We have every intention of keeping both campuses open," Denton says. "We don't want people to panic. But if the budget crisis worsens, it could be a different story. We know the governor is very supportive of our efforts. So is the legislature. But we know the budget is very lean."

Already, he said, some are working double duty at the two campuses. Parents have been recruited to cut the grass or work in the cafeteria or assist teachers. A sense of dread covers people whose lives already have been wounded.

"My daughter," Peggy Bartenstein says, "is a miracle."

The words hang in the air for a moment. Even miracles need help. Julie Bartenstein now signs 40 or 50 words. At the School for the Deaf's Columbia campus, where they deal with multiple-handicapped students, she's getting help in areas few other schools in the country can offer.

"Julie's a very strong-willed child," her mother says. "Sometimes she has major temper tantrums. When she was born, the doctors said, she's a very sweet baby, but you're not gonna make her do what she doesn't want to do.

"Thank goodness, they were right. When she went through chemotherapy, if it wasn't intravenous, she wouldn't take it. Oral antibiotics, forget it. She wouldn't take it. I mean, she's here in spite of herself. But, see, that stubbornness will take her further."

Julie spent months in a pediatric cancer ward before entering the School for the Deaf. She's stubborn, yes, but there's also a sweetness to her that's beyond words.

She awoke every day to a lab technician putting a needle into her arm to draw blood. It's not an easy way for anyone to start a day, but Julie had a message each morning when the technician was done. She blew him a kiss.

"The human stories are heartbreaking," Denton said yesterday. "Some of these children have been through so much, and we do have every intention of keeping both campuses open. That is our hope." But no one can give assurance. Nerve endings are a little frayed.

"My daughter," says Peggy Bartenstein, "has come so far."

Her words trail off into silence. She looks down at her daughter, who looks back up at her mother. In the silence, the mother waits for a shoe to drop in Annapolis.